When my non-verbal autistic son turned 16 in November, we did not celebrate a milestone of independence. Instead, we marked another year navigating a system of profound silence.The long-awaited Autism Management Bill, 2025, should have been a beacon. Instead, reading its text felt like hearing a well-intentioned but distant echo of our daily struggle.The bill, while historic in its intent, is architecturally unsound. It builds a clinic where we need a community, focuses on the starting line of diagnosis while families like mine are running a marathon without support, and speaks of management when what we desperately seek is dignity, inclusion and a viable future.Its heart is in the right place, but its vision is dangerously narrow.The bill places overwhelming emphasis on “early screening”, “diagnostic centres” and “treatment”. In doing so, it medicalises a condition that is, first and foremost, a lifelong neurodevelopmental reality. The World Health Organisation underscores the value of early identification, but equally stresses that “a continuum of care is required”, with support evolving across the lifespan.For my son, whose childhood milestones in communication and learning remain unmet, the cliff-edge after paediatric care looms larger each day. A bill that legislates primarily for the child in the doctor’s office says little to the teenager who cannot access a secondary school, or the adult who will require structured daytime activity and lifelong care. It provides a compass for the first step of a journey, then throws the map away.We need only look to established jurisdictions for a more complete blueprint. The United Kingdom’s Autism Act 2009 stands as a global exemplar precisely because it focuses strongly on adults. It legally obligates the government to maintain and fund a cross-departmental strategy covering health, social care, employment and housing.It recognises a simple truth: turning 18 does not cure autism.Similarly, in the United States, the Individuals with Disabilities Education Act guarantees legally binding, individualised education plans for eligible children, backed by enforceable rights for parents.By contrast, Clause 8 of Kenya’s proposed bill—which introduces autism awareness in teacher training—is a whisper where a roar is needed. Awareness alone cannot replace the legal right to a tailored curriculum, speech therapy or a sensory-friendly classroom that many autistic learners need to thrive.Perhaps the most glaring omission is one of voice.The bill establishes “Autism Units” within health ministries but does not require that a single autistic person or primary caregiver help steer them. This contradicts the central tenet of the global disability rights movement: “Nothing About Us Without Us,” a principle enshrined in the UN Convention on the Rights of Persons with Disabilities.It perpetuates a system where policies are designed for a community, not with it.In practice, this means the lived realities of families—those battling the crushing cost of therapy, fighting for school inclusion, or confronting the terrifying question of “what happens when I am gone?”—are treated as anecdote rather than essential evidence for policy design.The bill also ignores the financial and social pressures that weigh heavily on families. It is silent on the staggering cost of therapy, the urgent need for respite care to prevent caregiver burnout, and the complex guardianship questions faced by autistic adults.Even its proposal for a national autism database raises concerns if implemented without strong privacy safeguards. Such a registry could one day risk exclusion rather than support.This is not a call to discard the bill. It is a plea to rebuild it.The public participation process offers an opportunity to transform the Autism Management Bill into something far more meaningful—an Autism Rights and Inclusion Bill.To achieve that, three major shifts are necessary.First, the legislation must adopt a lifespan approach. It should legally require coordination between the Ministries of Health, Education, Labour and Transport to support education, employment, housing and community inclusion throughout a person’s life.Second, it must move beyond general principles to enforceable rights. This includes statutory guarantees for individualised education and support plans, access to therapies, and independent grievance mechanisms when those rights are denied.Third, it must institutionalise co-production. The proposed autism units should include equal representation from autistic self-advocates and caregivers, ensuring that lived experience informs policy, training and service delivery.My son may never speak a word, but this bill must speak for him.It must recognise the whole of his life, not just the label of his diagnosis.Kenya has an opportunity not merely to manage autism, but to pioneer a model of inclusion for the region. We can build a legacy that offers more than a diagnostic centre—we can offer a future.But for that to happen, the drafters must return to the drawing board, guided by the voices of those they seek to serve.The dignity of thousands depends on it.The writer is the father of an autistic teenager and an autism advocate.